No Follow-Up After Positive Newborn Screening: Medical Neglect?

Abstract

The current study examined medical professionals' behaviors related to reporting medical neglect when a family is noncompliant with follow-up services after a positive newborn screening result. Pediatric medical professionals within an urban medical campus were provided with five case vignettes in relation to different diseases. Medical professionals rated the severity of family noncompliance with follow-up services and indicated whether they would report suspected medical neglect to Child Protective Services (CPS). Physicians were more likely to report medical neglect than the other mandated reporters in the study. Logistic regression analyses found that medical professionals' perceptions of the severity of family noncompliance with services were significantly predictive of decisions to report medical neglect. Respondent gender and the method by which families were notified of screening results also significantly affected reporting behaviors in certain instances. Although all vignettes included information that met legal statutes for reporting neglect, medical professionals indicated that they would only report neglect 40-61% of the time across vignettes. Continued investigation of the rationale behind medical professionals' decision-making process and training protocols designed to improve mandated reporter knowledge and reporting behaviors are needed to further reduce bias and improve objectivity when considering ethical and professional obligations to report medical neglect.

Analysis of neonatal screening and recall of 338,680 neonates in Haidian District in Beijing, China: A retrospective observational study

“…Almost all provinces in China have now launched neonatal screening programs, most of them including screening for congenital hypothyroidism (CH) and phenylketonuria (PKU). With progressive increasing screening rates, follow-up of neonates suspected of having an inherited metabolic disorder is particularly important, such follow-up being the main indicator of the quality of screening [2]. To the best of our knowledge, no research on the timing of follow-up of such patients has yet been performed in China.…”

Outcomes of referrals to Child Protective Services for medical neglect in patients with phenylketonuria: Experiences at a single treatment center

“…4.4 Despite mandatory reporting laws and support from medical literature, health care providers often are conflicted regarding filing a child neglect complaint with CPS [24], especially when such a referral may not result in improvements in long-term adherence to medical management recommendations. However, in our experience, CPS interventions were successful in re-establishing communication with a caregiver when otherwise the child with PKU likely would have been lost to follow-up.…”

Characteristics of Children Reported to Child Protective Services for Medical Neglect

“…For example, medical professionals were asked to review vignettes describing families failing to seek medical care after a positive newborn screen for diseases such as phenylketonuria, sickle cell disease, congenital hypothyroidism, cystic fibrosis, and carnitine palmitoyltransferase. 11 Respondents were then asked to indicate if they would file a report to CPS for medical neglect. Although all vignettes described failure to seek necessary medical care, reporting rates ranged from 40% to 61%, and varied based on respondent gender.…”

“…Although all vignettes described failure to seek necessary medical care, reporting rates ranged from 40% to 61%, and varied based on respondent gender. 11 Enhanced understanding of health conditions and health care of medical neglect victims could inform research aimed at improving medical neglect identification and management. The American Academy of Pediatrics report also outlines possible reasons that families fail to seek appropriate medical care.…”